To not cope with “newly” autistic 11 year old?

[Blanketsandcandles]

I am at a total loss today.
11 year has old been diagnosed with autism after suffering what has been diagnosed as burnout. I am still digesting this as prior to her burnout symptoms, I had no concerns. Over the last year she has deteriorated; developed auditory sensitivity, separation anxiety, broken sleep, restricted eating, became challenging in school and lost all her friends due to not managing to keep up social demands. She’s now refusing school completely and I’ve had to take a pause from work to care for her full time. This weekend has been spent with her in her room, in the dark, screaming at me when I go in. She can’t tolerate clothes anymore and lives in her cousin’s old rugby top. I wish I was exaggerating when I say I feel I’m fallen into some movie where the child is possessed. There seems to be 0 help apart from CAMHS who aren’t actually doing anything apart from suggesting books I’ve read and also don’t help with the practicalities of day to day life. I can’t stay off work forever and I’m on my own with her (dad hasn’t been in the picture since she was 2) and I most definitely do not have a “village” as I keep reading about. I read all these ND accounts who talk about the strengths that come with parenting a child with SEN but I don’t find any joy at all. Any hope this gets better?

Have you investigated PANDAS? Has she had an infection in the last year or so? Has she had a full blood count recently including a vitamin check?
This sounds very hard

https://panspandasuk.org/what-are-pans-and-pandas/

I honestly wouldn’t accept the ‘this is just autism’ thing lying down.

I don’t know what PAANDA is, I don’t think so. I’ll look it up. She’s not ill, she’s just completely gone….apparently autistic girls mask until this age and then they can’t anymore. I feel dreadful I had no idea and it’s got this far and am so scared this is how it will be for ever now. She had a blood test in February/ March to check if she was anemic as was very pale and tired but it was fine.

I just don’t accept that this sudden onset is ‘who she always was’ and masking is a very new and poorly evidenced theory.

I really would push for more thorough blood screening. This is a very extreme personality change, and sounds somewhat neurological. Can you book a private GP? They’re often more thorough with these things as there’s no cost constraints.

I remember a mum on here having similar with her child and it turned out to be very low vitamin D - will see if I can find it

I would echo others’ comments that to go from zero concerns from anyone to this is very very worrying. I would push GP for a referral to paediatrics.

There's no evidence to say PANDAS is real. It's mostly pseudo science.

GP seems unconcerned and says it’s burnout and he sees it a lot. I just don’t know what to do. My colleague had a child last year who had cancer, and I know it is far more serious, but they were given so much help, despite coming to the house, grants to cover her year not working and therapy. I’m not in any way trying to take that support away but there is just…nothing, and it’s just for me to manage alone, not working and goodness knows how I’ll manage to when I do go back. I keep reading about amazing strengths that come with being a SEN parent and I can’t see any. I’m terrified, worried for A and completely shellshocked at the new normal.

The GP did a neurological screen (don’t remember the details but involved her standing with eyes closed and then walking) and said no concerns. I can’t afford a private consultation.
I just had a look at the link above, thank you. It does on quick reading look oddly similar with symptoms.

PANDAS. Amazed your GP didn't mention it..my DD had it and got said they'd had a weird cluster of kids with similar symptoms, so her theory was it was a particular virus that was circulating.

Really? I’ve never even heard of it. GP definitely didn’t mention anything other than autism and autistic burnout.

Have you applied for dla?

If your child is needing extra support due to being ND she is entitled and that opens up far more for you on terms of financial support - including carers allowance.

Sometimes you do have to take unpaid leave and then can get UC with disability element and carers element.

It’s not always a long term financial solution but it’s looking in the right places for the financial support.

if she’s burnt out she’ll need to regress right back and recover before moving forward. It’s not a quick fix but she may well just need to pay in a comfy clothes in a dark room for now.

ask the school about tutoring because if she’s medically unfit for more than 15 days it kicks in.

Hoj need to read up and learn about what support your entitled to because sadly joins will offer it unless you ask them how they will meet their statutory responsibilities.

This sounds horrendous.

We went to a private child psychiatrist when our child stopped being able to function. Couldn't afford it, not helped by me having to give up work, but did it anyway out of desperation. Got antidepressants and slowly clawed her back. She was a bit older though. Lots of sympathy.

Sen parenting doesn't make you strong. Who told you that nonsense? It's relentless, exhausting and soul destroying. One of mine went downhill when she started secondary, also burnout etc and 5 years on still not recovered.

Are you getting all the right benefits? DLA, if he gets at least middle rate care you qualify for carers. There are extra elements to tax credits if the child is on DLA. It's not the same as a wage but it will keep you afloat.

I agree with people. If she's autistic, she will have been autistic for 11 years. I can totally get parents not having enough solid ground to get their child diagnosed for 11 years, especially with a girl as overall girls tend to mask better than boys, but I am really sceptical of 11 years with "no concerns" and then suddenly not cope with school at all.

It sounds to me more like a new condition that she has just caught or has somehow happened in her body right now. I would be exploring other mental and physical options.

I just saw a Times article link in my Google, looks like their editor’s child had it? How have I never heard of this. Nervous to get my hopes up that maybe this is something that could be reversed and my girl could come back to me again.

Wow didn't know that. It seems fairly widely accepted though? Dd had sudden onset severe OCD about allergy and food I was worried sick thinking she'd never eat properly again. It lasted maybe a few months and gradually got better with no treatment. Must be something in it.

I’ve not looked into DLA, I will. It’s all new to me. thank you.

I think masking is quite a lazy way sometimes to explain these types of changes in behaviour/personality (whether over time or hour to hour). While there may be some degree of masking in any condition a person has (ND or otherwise) and in normal human behaviour, it has been given a huge significance that it doesnt deserve

Investigate further OP

I didn’t meant to be triggering, I’m sorry, I had a clumsy look on Instagram and saw so many amazing SEN parents saying how much beauty they find in their child and seem so positive and I detest our new life of her locked in her room like a feral animal and me tiptoeing round the flat lest I make a noise that starts her screaming again. I’m so scared for the future.

Has your daughter been assessed for an autism diagnosis or did the GP just say this?

Did you go private for the autism diagnosis? Confused how you went from no concerns to confirmed diagnosis within a year?

No she has been assessed by CAMHS. They said they are seeing more and more girls of this age who have masked for years and then the social and academic demands get too much. They did say there was nothing in her early years reports to flag ND but said girls are master maskers until they can’t.

Looks at PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). The other is PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). My niece has PANS, and is also autistic. Apparently PANS is more likely if a person is ND. Yes, it could be burn-out, but equally it might be something like PANS.

No I can’t afford private anything. Our CAMHS service has a ND screening company they work alongside so we were sent there, just shy of a year after symptoms onset,

I do think the fact it has developed over the course of a year does sound more like autistic burnout. PANDAS type symptoms usually come in within days after an infectious illness.